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Seeing A Mother's Alzheimer's As A Time Of Healing And Magic

NPR Health Blog - Sat, 09/10/2016 - 5:00am
Courtesy of Dana Walrath

In 2008, Dana Walrath asked her mother Alice to move in with her. Alice's Alzheimer's disease had gotten worse, and even though she still had all her humor and graces, she could no longer take care of herself.

During the next two and-a-half years, Walrath and her mother connected through stories and memories, even though Alice didn't always recognize her daughter. Walrath, a medical anthropologist at the Vermont College of Medicine, in Burlington, Vt., looks back fondly on that time.

"As an anthropologist you're always encouraged to document everything you do, but it just felt right to live the experience," Walrath says.

In 2010, she began sketching Alice as a way to process her feelings about transferring her mother to an Alzheimer's care residence. She cut up a paperback copy of Alice in Wonderland, a book her mother loved, and used the fragmented words to craft collages of Alice.

Through curiously-sketched comic illustrations and vignettes, Walrath documents her experience with her mother's dementia in Aliceheimer's: Alzheimer's Through The Looking Glass, published in March by Penn State University Press.

Dana Walrath with her mother, Alice, in 2013.

Courtesy of Dana Walrath

Sometimes funny, sometimes heart-breaking, each comic weaves in a different facet of their shared experience: hallucinations, repetition, memory, loss, magic, and sometimes even time travel. In one vignette, Alice is transported to 1954, where she believes her grandsons are Johnny Depp-like pirates and Dana's husband is a fellow captive.

Walrath spoke with Shots about making the book and her experiences taking care of her mother. The conversation has been edited for length and clarity.

You say your experience was a time of "healing and magic," which doesn't follow the typical narrative around Alzheimer's disease. Can you explain that?

We've got a medical system that is so focused on curing things that when a cure hasn't been discovered yet, it's really scary. Most people are pining for the cure and focusing on the loss. If we say, "This is reality, this is what it is," and we stop fighting it, then surprising things can happen. People with dementia keep their sophistication and their intentions — they've just lost their short-term memories. They're working hard to figure out how to communicate and stay connected. And for those of us who have our memories, if we can read those signs, we can have those amazing connections. It just came naturally to me as an anthropologist — being used to this notion that everyone is walking around with a framework in their head that comes from their culture that may be very different from mine.

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If she was hallucinating, she'd wake up from a nap and say her mother was right there, and say, "Can't you see her?" I'd say, "That's so cool you can see her, you have special powers." It was a way of making her reality safe and then being able to explore from there.

I like thinking about it the way improv comedians do. They use a "yes and" principal. So whatever she was experiencing I would endorse and then build upon it so that there would be collective magic.

How would she respond?

She felt great that what she was experiencing was a special power. And then she had pride in that, she felt met, and then we could go on and process the next thing. The hallucinations about her parents made me think she needed to go and visit her parents' graves. Once we did that, she stopped having those hallucinations.

You say that it wasn't until you started cutting up the book Alice In Wonderland that this book started to come together. How did that happen?

Once I found the collage element, my subconscious was completely engaged and then all these other things started to come out.

Like those halos around Alice's head. I think, oh my gosh, that's a subconscious reference to her first language, her reversion to childhood, and the altered magical state that dementia is and was for me.

Has the process of making this book changed the way you think about Alzheimer's?

Courtesy of Dana Walrath

I believe that if we can look at people with dementia and cognitive differences as just another way of being human, it's better. We can learn so much from people in altered states. When my mother was living with us, I got in the habit of buying cut flowers because she would just marvel at them. At dinner she'd say nearly 20, 30 times, "Those flowers are gorgeous!" and it's something a lot of us forget to do. It's probably good for all of us to stop and notice what's there and good and what we can be grateful for. I look at it as a different window into being human.

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College High: Students Are Using More Marijuana, Fewer Opioids

NPR Health Blog - Fri, 09/09/2016 - 3:12pm

Legalization of recreational marijuana may be a factor influencing increased use college-age young adults.

Diverse Images/UIG/Getty Images

High school students and young adults are much less likely to use illicit drugs than their parents, according to data released Thursday. And compared to baby boomers, young adults today look like outright angels. Except for their acceptance of marijuana, that is.

This report comes from a running, four-decade-long study of drug, tobacco and alcohol use from the University of Michigan. This most recent iteration shows that people in their 40s and 50s used far more drugs in their youth than do people in their teens and 20s today.

"The proportion of Americans in their 40s and 50s who have experience with illicit drugs is quite shocking," says Lloyd Johnston, a research scientist at the University of Michigan and the lead investigator on the study. "It's a great majority."

Not counting marijuana, over 70 percent of people in their 50s have used illegal drugs in their lifetimes. Including marijuana, the proportion soars to about 85 percent of people in their 50s. Back when these people were in college, nearly half of them were using illegal drugs compared to around 40 percent of college-aged adults today.

In fact, young people have been increasingly shunning psychoactive substances for a while now. Cigarette use is at an all-time low, with 20.5 percent of college students saying they smoked in 2015 compared to 44.5 percent in 1999.

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"Maybe the most important of all is the decline in narcotic drugs like Vicodin and OxyContin and so forth," Johnston says. Use of prescription opioids by college students has dropped from 8.7 percent in 2003 to 3.3 percent in 2015. "That's despite the fact that we know from the news that the use and misuse of narcotic drugs is a growing problem in the country," Johnston says.

The reason is not completely clear, Johnston says, but it probably has to do with young people learning to be wary. "When someone sees a substance is dangerous, they tend to avoid it," he says. "And one of the things we've seen is an increased in perceived risk for a number of drugs."

But when it comes to marijuana, the trend reverses. "For the most part, among both college and high school students their perception of how dangerous [cannabis] is has dropped like a rock," Johnston says. That tracks closely with how use of cannabis, which has been steadily rising for the past couple of decades.

The policy debate around the legalization of recreational and medical marijuana is probably making the drug seem a lot less dangerous, Johnston thinks. "It's hard to see what else would account for such a dramatic change in perceived risk," he says. Other studies have shown that negative messages about cannabis are rare on social media.

And negative opinions or information about other drugs floating on the Internet could make them seem more dangerous.

Shortly after synthetic marijuana, also called spice, became popular, videos on YouTube and Twitter showed terrifying effects the drug had on users. This report shows an abrupt drop in spice use, from 8.5 percent of college students to 1.5 percent in 2015.

"The use of the Internet has certainly increased information exchange from objective sources and other people the same age," Johnston says. "Perhaps young people today are more informed about things."

There's also a lot of federal funding available for drug prevention programs that target young people, particularly high school-aged students, says Jennifer Whitehill, a public health researcher at the University of Massachusetts, Amherst. And a lot of drug awareness campaigns didn't get started until after the 1980s. That could also contribute to the declining use of drugs among young people.

Whatever the reason, the declines in illicit drug use don't mean our society is going to become drug-free. The last period of declining drug use was in the late '80s, and Johnston says that efforts to reduce drug use started dropping off after that. "Congress spent less time and money on the drug issue and, most importantly, the media dropped the drug issue." That gave a bump to drug use in the '90s.

The decline right now could just be setting the stage for another resurgence of illegal drug use, Johnston says. "As we're seeing a period of decline in illicit drugs, there's less attention to the issue, and young people grow up knowing less about why they shouldn't use them."

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A Map To Help Cancer Doctors Find Their Way

NPR Health Blog - Fri, 09/09/2016 - 9:32am

A computer model could map the paths a cancer is likely to take.

Jennifer C. Waters/Science Source

What if doctors could call up a computerized map that would show them how a case of cancer is likely to progress?

Tumor cells can mutate in unexpected ways. And cancers can suddenly grow. For doctors, anticipating cancer's next moves can help guide timely, effective patient treatment.

A mapping program, called PiCnIc for short, aims to help physicians in staying a step ahead of cancer and preparing long-term treatment plans with fewer elements of surprise.

How does it work?

PiCnIc "takes in patient data, guesses potential scenarios and tells you the most likely scenario," says Bud Mishra, a professor at New York University's Courant Institute of Mathematical Sciences who led a multinational team in developing the program.

PiCnIc produces maps of cancer progression in much the same way historical explorers drew maps of the Earth without satellite imaging. The program, like the explorers, draws tiny regional maps and then pieces them together like a puzzle.

The program extracts the simplest pieces of information from medical data, which Mishra calls "little blocks of causality." They describe one stage of cancer, along with a potential outcome.

Once the blocks of causality are constructed, PiCnIc examines them to retain only the likeliest paths. This process is akin to discarding poorly drawn regional maps before attempting to put together a global map.

The end result is a graphical representation of the possible scenarios a cancer patient might encounter. From it, physicians can hypothesize how cancer will progress and plan accordingly.

Just like a good cartographer, PiCnIc is capable of drawing all kinds of maps, as long as appropriate medical data are available. "[PiCnIc] is quite flexible. It can incorporate pretty much any cancer type," says Nicholas Navin, a professor at the University of Texas MD Anderson Cancer Center who wasn't involved in the creation of PiCnIc. Navin says that PiCnIc, at its current stage of development, "already gives [us] enough information to be clinically useful."

The program can also update the maps to factor in advances in cancer research as well, says Giulio Caravagna, a computational biologist at the University of Edinburgh who participated in the research project. As new medical data become available, researchers can rerun PiCnIc with ease to generate updated maps of cancer. "And there is already a pretty good amount of data, like the Cancer Genome Atlas," says Caravagna.

The research work was published on the Proceedings of the National Academy of Sciences in late June. Mishra says that he plans to look into "commercial opportunities" for PiCnIc and collaborations with "large research labs" to improve it.

For now, though, the PiCnIc maps "shouldn't be interpreted too much in making decisions for individual patient," says Navin.

"We are a little bit underpowered to comprehensively build these [maps of cancer]... there are still little ways to go," says Ben Raphael, a computational biologist at Brown University.

A cartographer is only as good as the measurements the explorers bring in, after all.

Copyright 2016 NPR. To see more, visit NPR.
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Pot And Pregnancy: No Harm Seen At Birth, But Many Questions Remain

NPR Health Blog - Thu, 09/08/2016 - 5:09pm

Since marijuana doesn't benefit mother or baby it should be avoided, researchers say. But there is stronger evidence for the harms of alcohol and tobacco.

Roy Morsch/Getty Images

Between 2 percent and 5 percent of women say they use marijuana while pregnant, according to the American College of Obstetrics and Gynecology. And while harm to the fetus is certainly plausible since the drug crosses the placenta, the evidence has been spotty. Now a review and analysis of 31 previously published studies has found no independent connection between a mother's pot use and adverse birth events. But the doctors say that doesn't mean it's OK to partake.

Based on unadjusted data, the review found a link between marijuana use and both low birth weight and preterm delivery. But when the researchers adjusted the data to account for confounding factors including tobacco — which is often used alongside marijuana — there was no association, says Shayna Conner, an assistant professor in the division of maternal fetal medicine and ultrasound at Washington University in St. Louis School of Medicine and an author of the study.

In other words, from the available evidence it seems that the risk surrounding birth is from tobacco use and other factors, not from the marijuana itself.

Shots - Health News Pediatricians Say Absolutely No Drinking While Pregnant

Conner emphasizes that message is still clear: Don't use pot when you're pregnant. "Any foreign substance that doesn't directly benefit maternal or fetal health should be avoided," she says. But the analysis suggests that public health dollars budgeted for preventing bad birth outcomes should be spent to discourage the things with more evidence of harm, such as tobacco or alcohol, she says.

There are still plenty of reasons for women to be cautious about marijuana use. For one, the body of evidence on this topic is inconsistent. Different studies looked at different neonatal outcomes. And most of the studies relied at least in part on women to report their marijuana use. "That may mean that patients who do smoke but don't tell their provider may be misclassified," says Conner.

Moreover, this review, which was published Thursday in Obstetrics & Gynecology, focused only on adverse neonatal outcomes such as low birth weight, preterm delivery and stillbirth. It didn't cover the long-term risk of neurodevelopmental problems such as cognitive difficulties or ADHD. A separate review of evidence published in December found that while the studies in humans on that topic are flawed, "there is a concerning pattern of altered neurodevelopment with early, heavy maternal use of marijuana."

"Any time there's a substance that we're not sure of the effects on the fetus or the mother during pregnancy, unless we know of a strong benefit to using the substance we'd advise not to use it," says Torri Metz, an assistant professor of maternal-fetal medicine at the University of Colorado Denver, and an author of that December paper. It also found no solid evidence for the benefits of medical marijuana in pregnancy to prevent nausea. She and her co-author called for high-quality prospective studies to better understand the impact of marijuana use on pregnancy and breastfeeding.

And how should women who are trying to conceive or who aren't using birth control think about pot? The Centers for Disease Control and Prevention got a lot of flak earlier this year for recommending that women in those circumstances abstain from drinking alcohol altogether.

Very few studies have looked at the time of marijuana exposure and connected that to outcomes. But Conner said many of the studies covered by the new review included women in the earliest part of their pregnancies, which might give some reassurance to women who are worried about pot use before they discovered they were pregnant.

In Colorado, where both medical and recreational use of marijuana are legal, the Department of Public Health & Environment advises women not to use the drug during pregnancy. In fact, if the baby is tested at birth and is positive for THC, the law requires child protective services be notified.

The question of how prenatal exposure to pot affects a baby will almost certainly become more pressing, with five states including California voting in November on whether to legalize recreational use.

Katherine Hobson is a freelance health and science writer based in Brooklyn, N.Y. She's on Twitter: @katherinehobson

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Widespread Use Of Prescription Drugs Provides Ample Supply For Abuse

NPR Health Blog - Thu, 09/08/2016 - 4:25pm

Nearly half of Americans 12 and older take sedatives, stimulants, painkillers or tranquilizers.

Izabela Habur/Getty Images

Almost half of all Americans take prescription painkillers, tranquilizers, stimulants or sedatives, according to results of a federal survey released Thursday. The prevalent use of these drugs could help explain why millions of Americans end up misusing or abusing them.

Last year, for the first time, the government's National Survey on Drug Use decided to ask the people it interviewed about all uses of prescription medicines, not just inappropriate use. The survey found that 119 million Americans age 12 and over took prescription psychotherapeutic drugs. That's 45 percent of the population.

Of those, about 19 million Americans didn't follow a prescription. Most misuse involved people who acquired the drugs from friends or family. More than a third had a prescription but took those drugs excessively. And about 5 percent bought drugs from a dealer or stranger.

All told, 16 percent of all prescription drug use was actually misuse, according to the report.

There's no question that these drugs help alleviate pain and suffering for millions of Americans. But it's also clear that the system encourages overuse.

"Any of us go to the doctor and feel like we don't get our money's worth if we don't come out with a prescription, right?" Kim Johnson told Shots. She is director of the Center for Substance Abuse Treatment at the federal Substance Abuse and Mental Health Services Administration.

"Just like any drug, the more it's out there, the more it's available, the more likely it is to be abused," she said. And many of these drugs pose an additional risk because of their physical effects, including in some cases their addictive properties.

The Centers for Disease Control and Prevention is trying to reform prescribing practices, particularly for opioid drugs, to reduce the overuse of these pain medications. The new survey also documents the dire need for affordable and accessible treatment options.

"One in 12 people aged 12 or over needed treatment for substance use disorder, yet nearly 90 percent of those people didn't get specialty treatment that could have helped them toward recovery," said Kana Enomoto, SAMHSA's principal deputy administrator, at a news conference.

That need for treatment pertains not just to prescription drug abuse but to street drugs such as heroin.

"We need to expand access to treatment and we need to do it now," said Michael Botticelli, director of the White House Office of National Drug Control Policy. "Because, like every other disease, people who want treatment should be able to get it. And it should not be dependent on where they live or how much money they have."

President Obama's budget for fiscal year 2017 called for more than $1 billion to expand access to drug treatment, but Congress has not acted on it.

You can email correspondent Richard Harris.

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WATCH: Bacteria Invade Antibiotics And Transform Into Superbugs

NPR Health Blog - Thu, 09/08/2016 - 2:02pm

If you've ever wanted to watch a superbug evolve before your very eyes, you're in luck. Researchers filmed an experiment that created bacteria a thousand times more drug-resistant than their ancestors. In the time-lapse video, a white bacterial colony creeps across an enormous black petri dish plated with vertical bands of successively higher doses of antibiotic.

The colony pauses when it hits the first band of antibiotic, creating a stark border between the white colony and the black petri dish. Then the bacteria start to edge their way into the toxic soup. More dots appear and they start growing, racing to the next, stronger band of antibiotic. The bacteria are evolving. After almost two weeks of real time have passed, they've become resistant to the strongest antibiotic and completely taken over the kitchen-table-sized petri dish.

We know dangerous bacteria are getting stronger all the time and that it's our fault because of our excessive and indiscriminate use of antibiotics. Each year, 23,000 people in the U.S. die as a result of superbug infections. But we typically don't get to see superbugs created.

For most people, evolution is just conceptual, says Tami Lieberman, an evolutionary microbiologist at MIT. She and her Ph.D. adviser, Roy Kishony at Harvard Medical School and Technion — Israel Institute of Technology, wanted something that would make the evolution of superbugs seem more concrete. "The goal was to see evolution, not to abstract it," she says.

Their video and report were published Thursday in the journal Science.

By having the E. coli bacteria grow across bands of increasingly stronger doses of antibiotic, the scientists could make it look like evolution was marching across the dish. But the setup had another effect that the researchers didn't expect. The faster growing colonies of resistant bacteria were cutting off the growth of slower but more drug-resistant colonies and becoming more successful.

When bacteria evolve drug resistance, it usually comes at some kind of cost to the bug. In the presence of an antibiotic, faster growing colonies don't grow as robustly as the slower ones — but that often doesn't matter. If the strain wants to live on, it just needs to be the first to get to the next human or food source. "[This] phenomenon has been very, very tough to study classically," says Michael Baym, the postdoc who built the 4- by 2-foot petri dish in Kishony's lab. In his contraption, it's impossible to miss.

And if scientists can see it, maybe they can start to study it. Using something as simple as a giant petri dish like this could help scientists open up that spatial dimension that has been missing from the lab, says Pamela Yeh, a microbiologist at UCLA who was not involved in the experiment. "Hopefully this will put back in people's minds how important the spatial element can be."

It's possible that there's a lot of research that can be done by getting away from small, classic petri dishes, Yeh says. But for now, Kishony's 2-by-4 is mostly just a demonstration. Hopefully, a useful one, Lieberman says. "Getting more people to understand how quickly bacteria evolve antibiotic resistance might help people understand why they shouldn't be prescribed antibiotics. The drug resistance is not some abstract threat. It's real."

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How A Dog In An MRI Scanner Is Like Your Grandma At A Disco

NPR Health Blog - Thu, 09/08/2016 - 4:58am
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September 8, 20164:58 AM ET Heard on Morning Edition

A relaxed, undrugged dog patiently waits its turn in the MRI scanner. The scientists' trick: Make it seem fun.

Enikő Kubinyi/Science

Dogs can be trained to do a multitude of tasks. Most can learn to sit, lie and stay; others can guide the blind, rescue the injured and maybe even detect cancer. But the hardest thing of all might be to train them to do nothing. Stop scratching. Don't wag your tail. Don't drool. Don't even lick your chops.

My dog can heed the command "stay" for a total of about four seconds. And that's on a good day. So when I read the terms of the recent study in the journal Science — dogs had to lie still for eight minutes straight in a clanging MRI machine, while wearing earphones and a radiofrequency coil — I had to talk to the researchers.

Shots - Health News Their Masters' Voices: Dogs Understand Tone And Meaning Of Words

Marta Gacsi, a behaviorial scientist at Eotvos Lorand University in Budapest, was responsible for training the dogs and is a co-author of the study by the Family Dog Project that's exploring how dogs understand and process human language.

"The dogs were not restrained in any way," Gacsi said. "We didn't apply any restraints to keep the dogs in the desired position or in the scanner. They could leave the tube and the scanner at any time they wanted to — and sometimes they did."

The dogs also had to be fully awake inside the scanner, she explained, as their owners talked to them. They could not be drugged. That would have thrown off the results. Oh, and they also had to learn to wear headphones and a radiofrequency coil — and lie still with their head between their paws.

My dog would never do that. Actually, Gacsi insisted, the easy part was teaching them to wear headphones. It's no different than training a puppy to wear a collar, she said.

Still, some of the best-trained dogs — those you might think would be ideal for this study — could not stay still for more than a minute or two and had to be kicked out of the experiment.

"They couldn't stand this," Gacsi said. The dogs were so attuned to the trainers' wishes, they couldn't relax. "OK, I've been lying for two minutes," these smart, good dogs seemed to say. "Now tell me what to do!"

Because those dogs got so frustrated, Gacsi said, "we couldn't use them. They couldn't understand the task was doing nothing."

So what was the trick to getting them to lie still inside an fMRI scanner for an entire eight minutes, with the machine horrifically banging away?

The secret, Gacsi said, was to convince the dogs that the whole thing was fun — that the MRI machine is the place where all the cool dogs party. Before the experiment actually began, all the dogs were invited in — they were praised, got lots of treats. Everyone was having a great time in the scanner.

To get a better sense of the scientists' strategy, Gacsi said, think about how you'd persuade your grandmother to enjoy going to a disco.

"It's noisy," Gacsi pointed out. "So many people! It smells. It doesn't seem fun for a grandma." But throw in some good food, or Grandma's favorite cocktail, and some fun, happy companions, and she might be persuaded.

"We tricked our dogs that we are happy to be there," she said. "So they wanted to be part of the party."

Not every dog, in the end, was persuaded to stay at this particular "disco." For the canines that were left, another difficult moment arose when the researchers had to take away the food reward. A disco without cocktails and salty snacks. Oh, and no dancing.

"They had to be absolutely motionless," Gacsi said. "They couldn't move their mouths; they couldn't swallow. ... They couldn't even expect food because of the drooling problem. They couldn't even think of cheese!"

Now, instead of using cheese bribes, the researchers solely rewarded the dogs with praise.

Each pup learned to stay longer and longer on the table, earning ever more praise. In the end, the scientists ended up with 13 dogs that could understand that they would get a treat at the end of the experiment — but only if they stayed still. Very, very still.

Try that at home.

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How Much Do Drugs For Rare Diseases Add To Health Care Spending?

NPR Health Blog - Wed, 09/07/2016 - 4:19pm

How big a deal is the spending on drugs for rare diseases?

Mark Airs/Ikon Images/Getty Images

Rising concerns about spending on prescription drugs that treat rare diseases are overblown, according to an analysis published Wednesday in the journal Health Affairs.

"We wanted to focus on the true impact of orphan drugs," said Victoria Divino, a senior consultant at IMS Health and an author of the study. Researchers at IMS Health, a health care analytics firm, and drugmaker Celgene Corp. looked at U.S. pharmaceutical spending from 2007 to 2013 on more than 300 drugs that had orphan approval under the 1983 Orphan Drug Act.

The Orphan Drug Act has long been considered a success for encouraging the production of hundreds of drugs for rare diseases. But the law's very success has raised economic concerns as the number of high-priced drugs for rare diseases has grown.

The review found that orphan drug spending in the United States totaled $15 billion in 2007 and $30 billion in 2013, an increase from 4.8 percent of total pharmaceutical spending to 8.9 percent. The current study projects orphan drug spending will remain fairly stable as a proportion of total drug spending. That stands in contrast to other published reports that estimate orphan drugs will account for 20 percent of worldwide spending on drugs (other than generics) by 2020.

The rise in orphan drug spending since 2007, Divino said, was caused by an increase in the number of orphan drugs approved by the Food and Drug Administration. The number of orphan drug approvals increased from 16 in 2007 to 33 in 2013, the analysis' time period.

The Health Affairs article is the latest in a growing debate about the causes of high prescription drug prices and how orphan drugs may play a role. Drugs that win orphan approval have been cited for commanding premium prices, costing up to $300,000 per year or more, according to market research reports.

The Orphan Drug Act provides a seven-year exclusivity period that blocks competition and other financial incentives to companies that develop drugs for diseases that affect fewer than 200,000 people.

The pharmaceutical industry's interest in orphan drugs has escalated in recent years and, increasingly, doctors and researchers have raised questions about unintended consequences of the act.

Celgene has been one of the top beneficiaries of the orphan drug law. The company's flagship drug Revlimid, which has orphan status for multiple myeloma and many other cancers, had sales of $5.8 billion in 2015. Evaluate Ltd., a London-based research firm, forecasts that Celgene will become the No. 1 orphan drug company in world, as measured by sales, in 2020.

"When those financial incentives become sort of an investment opportunity to take advantage of the Orphan Drug Act. That's a huge, huge concern," said Clare Krusing, a spokeswoman for America's Health Insurance Plans, a national association for health insurance companies. AHIP released a paper in August that questioned prices on orphan drugs when they were being used outside of their approved orphan indication.

For the Health Affairs paper, Divino and her team narrowed their analysis to orphan drug spending on drugs when they were used only on the rare diseases they were approved to treat under the act. The researchers used a database estimated to represent 98 percent of overall U.S. sales.

"The number of orphan drugs is increasing but when we look at this line of the actual spending and the forecast as well ... yes, there is growth but it's a consistent linear trend," Divino said.

Still, the authors' write, "in a broader context, drug expenditures are minimal when considered as part of total health care expenditures." Total orphan drug spending represented approximately 1 percent of total U.S. health care spending, according to the authors.

Divino said the study's focus was on aggregate spending and they didn't look at the effect of orphan drug prices on individual patients.

In an email statement, the pharmaceutical industry trade group PhRMA, said the study "reinforces that the overall impact of orphan medicines on payer budgets is relatively small and contrary to rhetoric, the percentage of medicines with both orphan and non-orphan indications is small."

But AHIP and others say that not including the cost of orphans when they aren't used to treat rare diseases skews the pricing issue for patients.

"It's not really the true orphans we worry about. It's about the other types of gaming and abusing the orphan drug act which drives up expenditures," AHIP's Krusing said.

Researchers at Johns Hopkins Medicine called on lawmakers last year to close loopholes in the act, saying the law's financial incentives encouraged high prices and motivated companies to apply for orphan designation even when a drug is known to treat more common conditions.

The paper, published in the American Journal of Clinical Oncology, noted that seven of the top-10 selling drugs worldwide in 2014 had received orphan status. Those listed included popular drug such as Crestor, a cholesterol fighter, and Humira, for rheumatoid arthritis and Crohn's disease.

"There are a lot of factors I think that have come up in pricing in general, but what people are getting a glimpse of is the sheer greed," said Dr. Martin Makary, an author of the 2015 paper and professor of health policy at Johns Hopkins School of Public Health.

Kaiser Health News is an editorially independent news service supported by the nonpartisan Kaiser Family Foundation. Follow Sarah Jane Tribble on Twitter: @sjtribble.

Copyright 2016 Kaiser Health News. To see more, visit Kaiser Health News.
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EpiPen's Dominance Driven By Competitors' Stumbles And Tragic Deaths

NPR Health Blog - Wed, 09/07/2016 - 12:52pm

Mylan lobbied state legislatures for laws that require schools to stock EpiPens.

Rich Pedroncelli/AP

Thirteen year-old Natalie Giorgi probably didn't know the name of the company that makes EpiPen. But the Sacramento, Calif., girl's death from a peanut-induced allergy attack in 2013 inspired passage of the California law that made the Mylan product a staple at every school in the state.

It was Giorgi's story, not industry lobbying, that state Senate Minority Leader Bob Huff says inspired him to usher through the requirement that public schools stock the injectors. He says he was also influenced by one of his staffers, who has a child with life-threatening allergies.

"It was just sort of organic," Huff says about carrying the bill. "It seemed like we ought to do better to protect these kids."

Mylan, the company that raked in $1 billion last year for the EpiPen, takes credit for passing legislation in 48 states to ensure schools have them. But its political maneuvering is only one reason the company has, in its own words, become "the number one dispensed epinephrine autoinjector."

High-profile deaths in several states, particularly among school-age children, have helped fuel demand for consumer-dispensed epinephrine. At the same time, no other company has been able to effectively compete with Mylan's drug-delivery device. Patent rules, and competitors' manufacturing foibles, also have helped the company reign over the consumer epinephrine market.

When someone with a severe allergy goes into anaphylactic shock and can't breathe, "seconds count," Mylan CEO Heather Bresch said in a recent CNBC interview about the EpiPen, which now has a sticker price of $608 per two-pack. That's why, she said, "they need to be everywhere."

Bresch said lobbying is just one way the company has spent hundreds of millions "developing" the EpiPen since it acquired the patent in 2007.

Indeed, Mylan's presence in statehouses across the country has grown exponentially. The company added lobbyists in 36 states between 2010 and 2014, according to the Center for Public Integrity, outpacing every other U.S. company. And it spent more than $1.3 million lobbying in 16 states since 2012, according to the National Institute on Money in State Politics (Those are not the exact states that passed the school requirements, however.)

Just in the past several years, 10 states have passed laws requiring epinephrine in schools. Another 38 states have passed laws permitting them, according to the Food Allergy Research and Education advocacy group (FARE).

Nebraska appears to have been the first state with a school epinephrine requirement. High asthma rates in the state, as well as a couple of school-based child fatalities due to the respiratory illness, created an emergency response protocol that became law in 2006.

In California's case, Huff said he had never even heard of Mylan until the recent uproar over the EpiPen price increases. But the company is listed as a supporter of his bill, and FARE, which is partially funded by Mylan, was an official sponsor.

Heather Bresch, CEO of Mylan, says that EpiPens "need to be everywhere."

Michael Nagle/Bloomberg via Getty Images

FARE asserts that Mylan's money goes toward its education work, not its advocacy. It didn't disclose exactly how much of its funding comes from Mylan, but says funding from corporate partners amounts to less than 10 percent of its budget. (On Wednesday, the organization said it would not take funding from companies selling the devices until there was "meaningful competition.")

"In some states, momentum has been garnered by a fatality," says Jennifer Jobrack, senior national director of Advocacy at FARE, who says local lawmakers and activists call them in for help to craft policy.

"Legislators are looking for something they know will have a positive impact," Jobrack says.

Virginia's law, passed in 2012, came after 7-year-old Amarria Johnson died at a Chesterfield County school from a reaction to peanuts. A Texas teenager's death from fire ant bites led to that state's law permitting epinephrine in schools.

The push to require EpiPens got a high-level boost in 2013, as President Obama disclosed his daughter Malia's peanut allergy when he signed off on the federal law, which gives financial incentives to states that require the medication in schools. Co-author of the federal legislation, Rep. Steny Hoyer, D-Md., cited his 11-year-old granddaughter's peanut allergy when the EpiPen law passed the House. FARE and Mylan supported that as well.

With the help of these laws, Mylan's EpiPens are at 63,000 schools nationwide. The company also has distributed 500,000 of them for free through EpiPens4Schools.

The school giveaway program brings visibility and credibility to the EpiPen brand, building a consumer base beyond schools.

"It's kind of like the first hit's for free," says Nicholson Price, an assistant professor at the University of Michigan Law School. "You want to start people off with your product, and getting these products in at schools is a great way."

New York State's attorney general announced Tuesday it will investigate Mylan to determine whether it introduced "anticompetitive terms" into school contracts. STAT recently reported that participants of Mylan's EpiPen4schools program had to agree not to purchase EpiPen-like products for 12 months in order to get a discount.

Mylan also has a virtual monopoly on epinephrine autoinjectors simply because there are almost no other products like it, either branded or generic.

Mylan has a patent on the drug-device combo until 2025. If companies want to make a generic EpiPen, they have to sue Mylan in court to try to invalidate its exclusive rights on the injector, according to Jacob Sherkow, an associate professor at New York Law School.

Trying to create an EpiPen generic is an expensive and risky endeavor, says Sherkow. Even if a company is successful in court, manufacturing the device, which must be identical to the EpiPen, is also challenging.

Copying a chemical compound, like ibuprofen, is easier than reproducing a piece of hardware like the iPhone, says Sherkow. Patents are publicly available, and can act as an "instruction manual," but a lot can go wrong in the actual production of EpiPen syringes.

"The drug inside can't degrade or leak; they need to withstand shipping; they need to work at a wide range of temperatures; they need to be handled safely — to not accidentally inject the user with the needle," says Sherkow.

Teva Pharmaceuticals took on these challenges. It sued to invalidate Mylan's patent in court so that it could make a generic version of EpiPen, and successfully got the green light to do so through a settlement agreement. But Teva has yet to win FDA approval to release the product.

Other companies have tried to make their own version of the epinephrine injector without attempting to copy the EpiPen. But their efforts haven't been very successful either.

Amedra pharmaceuticals makes Adrenaclick, which has an injector with two caps (EpiPen has only one.) But Amedra has limited manufacturing capabilities for the device and a barely visible market share, according to Price.

Auvi-Q, made by Sanofi, was taken off the market in October 2015 after concerns the device wasn't dispensing the proper dose of epinephrine.

More epinephrine products will be on the market in 2017. Teva's generic version of the EpiPen is expected to be reintroduced then, and Mylan will put out its own generic in the coming weeks.

It's too early to tell if more consumer choices will bring down EpiPen's price.

This story is part of a collaboration between NPR and Kaiser Health News. Former Kaiser Health News intern Zhai Yun Tan contributed to this report.

Copyright 2016 Kaiser Health News. To see more, visit Kaiser Health News.
Categories: NPR Blogs

Facebook And Mortality: Why Your Incessant Joy Gives Me The Blues

NPR Health Blog - Wed, 09/07/2016 - 11:48am
Mark Fiore/KQED

Clearly, researchers love Facebook, even if some of the rest of us are ambivalent.

A 2012 survey of social science papers related to the social network turned up 412 separate studies, and there have been even more since. Among the most popular questions: What effect does Facebook have on emotional states?

It does seem a reasonable question. After all, about 22 percent of the world's population uses Facebook regularly, according to the company, logging on for about 50 minutes a day. But is all this interconnectedness creating psychological benefits or global gloom?

The answer, it turns out, is complicated.

I experienced an emotional flip-flop myself around Thanksgiving of 2008, when I first joined up. For a week or so, I marveled at Facebook's ability to connect me to people who had long ago faded into the remotest recesses of memory. But by Christmas, I was in the midst of a full-fledged metaphysical breakdown.

Those scrolls down memory lane were killing me. Better to have left that kid from third grade, who now likes to post videos of his weightlifting triumphs, as I last remembered him — a skinny punk hitting a double off the schoolyard fence.

It was the collapse of that natural partition between past and present that I found upsetting, and a few months in, after noting the male-pattern baldness of yet another long-lost pal, I figured out why: Facebook punctured the intransigently juvenile aspect of my personality that had refused to recognize the passage of time.

And that, of course, provided yet another piece of evidence for the harshest reality of life: We are all going to die.

Nearly an hour a day

OK, that was my Facebook freak-out — how about yours?

Ask around. Lots of folks will volunteer one resentment or another. Maybe they don't like the time they spend on Facebook. Or they don't like the way people communicate on Facebook. Or they just don't like Facebook. As Laurence Scott wrote in his recent book on digital life, The Four-Dimensional Human, "Everyone knows someone perpetually on the brink of quitting" the site.

Yet, whatever gripes people have, they aren't hurting business. The amount of time we spend on Facebook and Instagram beats out our dedication to all leisure activities save one, James B Stewart recently noted in the New York Times. (Still the king: watching TV.)

Given the expanding role Facebook plays in a reported 1.65 billion lives or more, it's not surprising the site has been laden with a surfeit of social and political significance, credited with contributing to everything from a rise in adultery to the toppling of autocratic regimes.

Facebook and mental health

But what about contributing to depression?

Ethan Kross, the director of the Emotion & Self Control Lab at the University of Michigan, who has co-authored several papers about Facebook, says the early research was "all over the place" as to whether using the site boosted or depressed a person's mental state.

But it's the research finding a correlation between Facebook and feeling lousy that has drawn the attention of the media. A study making headlines in the spring looked at the relationship between social media use and depression. University of Pittsburgh researchers surveyed 1,787 U.S. adults, ages 19 through 32, and found three times the incidence of depression among the most active users of sites like Facebook, Twitter and Reddit than among those who used them the least.

Still, that doesn't mean use of the site is causing depression, the University of Pittsburgh researchers acknowledge. "It may be that people who already are depressed are turning to social media to fill a void," their study concludes.

A spokesperson for Facebook pointed me to a meta-analysis it collaborated on with two researchers, one who is a computational social psychologist now working on Facebook's data science team.

That analysis points out that most studies about Facebook and psychological well-being have been done using cross-sectional surveys — which means they derive data from research participants at a particular point in time, rather than looking longitudinally to see how someone's mood or mental health diagnosis shifts after heavy use of a social media site.

"You really can't draw any conclusions about what effects online communication in general or Facebook communication in particular has from cross-sectional data," said Carnegie Mellon University psychologist Robert Kraut, a co-author of the meta-analysis (he's consulted for Facebook but isn't on staff there).

A happiness deficit?

I asked Kraut about another study last year that caused a media stir; it came out of the Happiness Research Institute in Denmark (the happiest place on earth, apparently). The institute asked half of 1,095 people, most of whom were daily Facebook users, to abstain from using it for one week.

"People who had taken a break from Facebook felt happier and were less sad and lonely," an online presentation of the study said. Those on a Facebook "fast" also "reported a significantly higher level of satisfaction" and significantly less stress than those sentenced to remain on the site.

The study was limited — the behavioral change lasted only a week, and the work has yet to be published in a peer-reviewed journal. But Kraut thought it a "reasonable" approach for starting to get at the way we use Facebook, and how that might influence mood.

A small 2013 study also looked at whether Facebook use influences people's assessment of their own well-being over time. Researchers texted online surveys to 82 people every day for two weeks, asking them questions like "How do you feel right now?" Their answers were correlated with their use of Facebook.

The more people used Facebook the worse they subsequently felt, the paper reported. The researchers said "multiple types of evidence" showed there was no confounding of cause and effect in the study.

"Facebook use may constitute a unique form of social network interaction that predicts impoverished well-being," they wrote.

The big green 'E'

Some researchers have divided Facebook use into the categories of "active" and "passive." Active use includes those activities that facilitate direct communications, like commenting on posts or sending messages; passive use refers to the mere consumption of information — like scrolling through your news feed and glimpsing the lawn furniture your cousin just bought.

A handful of studies from different labs have now established links between passive Facebook use and envy or other negative mental states, said Kross, who has co-authored one such paper.

According to a 2013 research paper from Germany, for example, "upward social comparison and envy can be rampant" on Facebook and other social networks. The online environment promotes "narcissistic behavior," the researchers found, "with most users sharing only positive things about themselves." Among the 357 participants in the German studies, the researchers turned up a large number of what they called "envy-inducing incidents" — most frequently related to travel and leisure, social interactions and "happiness."

Furthermore, the researchers said, some Facebook users seem to engage in an "envy-coping plan" that involves "even greater self-promotion and impression management." And that can trigger what they called a "self-promotion-envy spiral."

A one-upmanship arms race.

Another couple of studies that Kross and his team published in 2015 managed to isolate envy as the culprit in bumming people out, as opposed to other characteristics like the number of "friends" a user has or self-esteem.

"Passive Facebook usage predicted envy, and envy predicted declines in affective well-being," the researchers concluded.

They included in the discussion section of their paper an anecdote from Randi Zuckerberg, the sister of Facebook founder Mark Zuckerberg. "I've had friends call me and say, 'Your life looks so amazing," Randi Zuckerberg told The New York Times in 2013. "And I tell them, 'I'm a marketer. I'm only posting the moments that are amazing.' "

'Do we have to see that?'

A friend of mine, who doesn't want to give her name (would you?) has been telling me for years that she gets genuinely depressed on Facebook, and it has everything to do with envy. She finds the serial posters particularly annoying.

"There's this woman I know and she is constantly posting, and she does some amazing things," my friend complained. "There's this jealous part of me, that's like, 'Do we have to see that?' Everyone seems like they're happy on Facebook."

Yes. After plodding through these studies, I felt the need to reassess my own Great Facebook Freakout of 2008. It wasn't hard to see that, just beneath the Proustian navel-gazing on time gone by, there was also a strong component of rivalry: If some of those losers from third grade had not exactly set the world on fire, they'd at least managed to get a few sparks going, while I still seemed to be gathering twigs for kindling.

Not that realizing that made me feel any better. But even if I'd done super-well in this status game, just the act of comparison might have been deflating. Contrary to some studies — and consistent with others (naturally) — research on Facebook and depression published in 2014 indicated "engaging in frequent social comparison of any kind may be deleterious to one's mental well-being."

The 'happy' studies

There are studies showing Facebook can enhance a sense of social connection. A 2007 study, for example, found that college students who were heavy Facebook users reported higher levels of "social capital," consisting of resources like emotional support and job opportunities that can arise from membership in a social network.

A 2012 study found that posting status updates decreased loneliness, even when those updates elicited no response. And a 2010 study recorded moment-by-moment physiological responses when using Facebook. The equipment logged indicators of pleasant emotion when users actively sought out information or directly communicated with their Facebook friends, but fewer such positive feelings when passively browsing.

Kraut and his team found the same sort of thing in a study published this week in the Journal of Computer-Mediated Communication. Receiving "likes" on something you post may offer a small boost in mood, but getting a positive comment on the post from someone important to you is likely to be much more satisfying, the researchers found.

It's up to you

Kraut, whose studies of the emotional effects of using the Internet go back to its early days, told me research generally shows that whether your Facebook experience will be good or bad depends on how you use it.

"In particular, having longer, more substantive communication with people you feel closer to seems to be associated with increases in psychological well-being," he said. "You don't get the same effects if the communication is with people who are weaker ties. What seems to be crucial is that these are effortful, targeted communications."

Kraut's advice: "Don't treat it as simple entertainment and consume everything that is put in front of you," he said. "Use it more proactively to communicate with people that you care about."

That sounds about right. Personally, I've made my peace with the site. It's true I sometimes find myself scanning that unceasing river of flattering photos, adorable babies and pronouncements of good fortune with a hollow sense of diminishment. Facebook offers a plethora of choices as to how I want to spend my time, and I don't always make the right one.

But in that, Facebook is a lot like life.

This story was produced by KQED's Future of You blog. Jon Brooks is a longtime KQED reporter and editor, and the blog's host.

Copyright 2016 KQED Public Media. To see more, visit KQED Public Media.
Categories: NPR Blogs

Pediatricians Recommend Flu Vaccination, Just Not With The Spray

NPR Health Blog - Tue, 09/06/2016 - 1:33pm

Fourth-grader Jasmine Johnson got a FluMist spray at her Annapolis, Md., elementary school in 2007. This year, the nasal spray vaccine isn't recommended.

Susan Biddle/Washington Post/Getty Images

Sorry, kids. Your pediatrician will probably give you the flu vaccine in the form of a shot this year.

The American Academy of Pediatrics said Tuesday that it doesn't recommend using the flu vaccine that comes as a nasal spray. That's because the federal Centers for Disease Control and Prevention looked at its performance last year and concluded it wasn't up to snuff.

The CDC's Advisory Committee on Immunization Practices found that FluMist was only 3 percent effective in children aged 2 through 17 during the previous flu season. "This 3 percent estimate means no protective benefit could be measured," the committee reported. In comparison, injected flu vaccines protected about two-thirds of the children in this age group.

The CDC officially accepted that committee's recommendation on August 26, but didn't go out of its way to announce the policy. It posted its recommendation on a website.

The American Academy of Pediatrics is now following suit, with recommendations that go out to doctors who tend to the nation's youngsters. "The AAP recommends annual seasonal influenza immunization for everyone 6 months and older, including children and adolescents," the statement reads.

The group notes that 85 children died from the flu in the United States during the recent season, based on CDC figures. Most had not been vaccinated.

The American Academy of Pediatrics says most children will need a single shot. But children new to flu vaccinations will need two doses, four weeks apart. So a double sorry to you.

The pediatricians also recommend flu vaccination for all health care workers and women who are pregnant, considering pregnancy or breastfeeding during the flu season.

The nasal spray vaccine has more fans than the inoculation that comes in a syringe, for obvious reasons. So this turn of events is not simply a disappointment to the manufacturer, AstraZeneca. In fact, the manufacturer took issue with the CDC committee's recommendation, to no avail.

In a statement emailed to Shots, AstraZeneca said it expects limited demand for FluMist in the U.S. but will make sure the vaccine is available in case some doctors request it.

Copyright 2016 NPR. To see more, visit NPR.
Categories: NPR Blogs

The Difficulty Of Enforcing Laws Against Driving While High

NPR Health Blog - Tue, 09/06/2016 - 1:03pm
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Abby McLean of Northglenn, Colo., stands near the stretch of U.S. 85 in Adams County where she was pulled over for a DUI check in September 2014.

Nathaniel Minor/CPR News

This story starts with a stay-at-home-mom from the Denver suburbs.

Her name is Abby McLean. She's 30 and lives in Northglenn, Colo. She was driving home from a late dinner with a friend two years ago when she came upon a DUI roadside checkpoint.

"I hadn't drank or smoked anything, so I was like, 'Let's go through the checkpoint,' " she recalls.

McLean is a regular marijuana user but she insists she never drives while high.

Still, the cop at the checkpoint tells her he smells marijuana and that her eyes are bloodshot. Eventually he whips out handcuffs and McClean freaks.

"Like, massive panic attack. And, 'Oh, my God, I have babies at home. I need to get home. I can't go to jail!' "

She didn't go to jail that night, but she got home hours late. A blood test later revealed McClean had 5 times the legal limit of THC, the mind-altering compound in marijuana.

Colorado's marijuana DUI law is modeled on the one for alcohol, which sets a number to determine when someone is too intoxicated to drive. For pot, that number is five nanograms of THC per milliliter of blood. Anything above that and the law says you shouldn't be driving.

It may sound like an open and shut case that could have resulted in any number of penalties. But McLean's attorney, Nadav Aschner, had a field day in court with Colorado's marijuana intoxication limit.

Shots - Health News Why Is It So Hard To Test Whether Drivers Are Stoned?

"Even the state's experts will say that number alone is something, but generally not enough, and we really hammered that home," he says.

Aschner got a hung jury and McLean pleaded to a lesser offense.

Still, McLean's trip through the criminal justice system is emblematic of numbers that suggest a sharp increase in marijuana DUI arrests in Colorado. So far this year, State Patrol data show that total DUI citations this year rose to 398 through early July, compared with 316 in for the same period 2015.

More states may come up with their own marijuana DUI guidelines. Voters in five states from California to Maine are deciding this November whether to legalize recreational marijuana. They're weighing the good, the bad and the still unknown. Issues like driving while stoned are still in the "unknown" category.

It turns out, measuring a person's THC is actually a poor indicator of intoxication. Unlike alcohol, THC gets stored in your fat cells, and isn't water-soluble like alcohol, says Thomas Marcotte, co-director of The Center for Medicinal Cannabis Research at the University of California, San Diego.

"Unlike alcohol, which has a generally linear relationship between the amount of alcohol you consume, your breath alcohol content and driving performance, the THC route of metabolism is very different," he explains.

That's why adapting drunk driving laws to marijuana makes for bad policy, says Mark Kleiman, a professor of public policy at New York University. "You can be positive for THC a week after the last time you used cannabis," he says. "Not subjectively impaired at all, not impaired at all by any objective measure, but still positive."

Still, Colorado and five other states have such laws on the books because pretty much everyone agrees that driving stoned can be dangerous, especially when combined with alcohol.

What cops really need is a simple roadside sobriety test. Scientists at UCSD are among researchers working on several apps that could measure how impaired one is behind the wheel. One has a person follow a square moving around a tablet screen with a finger, which measures something called "critical tracking." Another app measures time distortion, because things can slow way down when a person is high.

Those tests are still experimental.

Simulated marijuana smoke billows out of the windows of a car during a demonstration by the Colorado Department of Transportation.

David Zalubowski/AP

Denver District Attorney Mitch Morrissey says the uncertainty doesn't mean Colorado should throw out its THC limit. He says it may not be perfect, but it gives juries another piece of evidence to consider at trial.

"I think that putting in a nanogram level makes sense," says Morrissey. "I can't tell you what level it should be. I don't think Colorado's is right. I don't think it should be as high as it is. I think it should be lower."

Morrissey remembers trying alcohol DUI cases as a young prosecutor. The science wasn't settled then either, the blood alcohol standard was about twice as high as it is now, and it took years for it to be lowered.

"I think that has to do with better testing better technology," which Morrissey says will get improve for marijuana too.

In the meantime, some regular marijuana users, like Abby McLean, are scared to drive for fear of failed blood tests.

"I haven't gone out really since then, because I'm paranoid to run into the same surprise, 'Oh oh, there's a DUI checkpoint.' "

A checkpoint that could mean potentially thousands more dollars in attorneys fees to defend herself.

This story is part of a reporting partnership with NPR, local member stations and Kaiser Health News.

Copyright 2016 NPR. To see more, visit NPR.
Categories: NPR Blogs

Saline Nose Spray Might Help Tame Severe Nosebleeds

NPR Health Blog - Tue, 09/06/2016 - 12:32pm

Researchers tested a variety of medications to treat severe nosebleeds. But saline appears to work just as well.

Glow Wellness/Getty Images

Saline nose spray is becoming increasingly popular as a treatment for allergies and sinus problems. And a study suggests the cheap, simple solution helps with severe nosebleeds, too.

Two studies published Tuesday in JAMA, the journal of the American Medical Association, used saline nose spray as a control when testing medications to treat severe nosebleeds caused by a rare genetic condition.

None of the drugs were any better than the saline spray at preventing nosebleeds. But the participants in the U.S.-based study said their nosebleeds were much less severe — even if they were just using the saline.

The participants all have hereditary hemorrhagic telangiectasia, which causes blood vessel malformations. Pretty much everybody with HHT gets bloody noses, ranging from a minor occasional annoyance to several severe nosebleeds a day. Those can be so bad that people need blood transfusions to maintain blood volume and prevent anemia.

Researchers in the U.S. and France decided to test drugs that have been used for years to treat nosebleeds in people with HHT, but have never been properly evaluated in a clinical trial.

One was bevacizumab, commonly known as Avastin, which slows the growth of new blood vessels and is used to treat cancer and macular degeneration. The U.S. researchers also tested estriol, a form of the hormone estrogen, and tranexamic acid, which improves clotting.

None of the drugs, which were administered as nasal sprays, significantly reduced the number of nosebleeds. The French trial was stopped early because of that lack of benefit.

"It's frustrating that the medications didn't have the effect that the anecdotes suggest," says Dr. Kevin Whitehead, an associate professor of cardiovascular medicine at the University of Utah School of Medicine and co-director of the Utah HHT Center of Excellence. He has been treating patients HHT for years and is lead author on the U.S. study. "We had really hoped to see a real impact on the number of nosebleeds."

But there's a silver lining — Whitehead and his colleagues also asked people to track the severity of their nosebleeds. Two-third of the people said their nosebleeds weren't nearly as bad.

When the study was over and the researchers found out which drugs people had used, they were surprised to discover that the people using saline reported as much improvement as the people on meds.

"There was either a placebo effect or a real beneficial effect from the saline," Whitehead says. And though he can't prove it, he thinks the saline is actually doing something.

The most drastic treatment for severe nosebleeds from HHT is to sew the nose shut. That means that a person can no longer breathe through the nose, but it also means the nose doesn't get dried out. And the nosebleeds end.

After the 12-week study ended, the 106 participants in the U.S. trial were told they could continue on any of the medications. Some were interested in bevacizumab, Whitehead says, but reconsidered when they were told that each vial costs $500 to $800.

"At this point, now that we know what people were taking, we're really emphasizing that as a first-line treatment for nosebleed you should try saline nose spray," Whitehead says.

Dry air is a known cause of nosebleeds, so those of us with nosebleeds not caused by a rare genetic disorder can take heart that such a simple intervention has been endorsed by a randomized clinical trial published in a highfalutin medical journal.

It's not the first time that salty water has earned props from medical professionals. It's also increasingly recommended as a safe, simple treatment for colds, allergies and sinus infections.

Copyright 2016 NPR. To see more, visit NPR.
Categories: NPR Blogs

California Now Requires Timely Updates For Insurers' Doctor Directories

NPR Health Blog - Tue, 09/06/2016 - 11:32am

California State Sen. Ed Hernandez wrote a law to keep insurance directories up to date and to give consumers recourse when errors lead to surprise bills.

Rich Pedroncelli/AP

California State Sen. Ed Hernandez and his wife, Diane, are optometrists.

Diane handles some insurance matters for their practice, and she recently told him that a health plan had emailed to request more information: It wanted confirmation that they were both participating providers.

"I didn't say anything because I was afraid she'd be mad at me," says Hernandez, D-West Covina.

That's because the additional paperwork was probably his doing.

Hernandez, who chairs the California Senate Health Committee, is author of a newly enacted state law that aims to improve provider directories, long riddled with out-of-date and inaccurate information.

Under the law, insurance companies — and health care providers like the Hernandezes — must comply with new requirements to keep directories of in-network providers of care updated at least every quarter.

The law, which took effect July 1, also provides patients with some firepower to fight surprise medical bills that result from directory errors.

The law's reach is broad: It applies to Covered California and private market plans, as well as Medi-Cal managed care and most job-based insurance policies.

The inaccuracy of directories, Hernandez says, "has been and ... seems to continue to be a problem that needs to be rectified."

Several other states, from Georgia to Maryland, have passed similar legislation or are considering doing so, says Claire McAndrew, private insurance program director for Families USA, a national health care consumer advocacy group. In some states, insurance commissioners have adopted new rules through the regulatory process.

But California's law "is the most comprehensive," she says. "The level of detail in California goes beyond any other state." Federal officials also instituted a rule this year requiring directories be updated monthly for all plans sold on the 37 state marketplaces run by the federal government.

And they set new federal rules for Medicare Advantage plans, requiring that the companies contact doctors every three months and update their online directories within 30 days. A recent study in the journal Health Affairs found that provider directories for some health plans sold through Covered California and in the private market are so inaccurate that they create a "disheartening" situation for consumers trying to find doctors.

That finding was confirmed this month when California's Department of Managed Health Care announced that Anthem Blue Cross and Blue Shield of California — which were previously fined for inaccuracies in their Covered California provider directories — still had "disappointing" directory problems.

"We are optimistic and hopeful that the law ... will help," says DMHC director Shelley Rouillard.

Among the law's new rules:

  • Health plans must update their printed directories at least every quarter and their online directories at least every week if providers report changes.
  • Provider directories must be posted online and be available to anyone, not just enrollees. Print directories must be available upon request.
  • The directories must "prominently" display directions for consumers who want to report inaccuracies. Upon receiving complaints, plans have 30 business days to makes changes, if necessary.
  • Providers must inform plans within five business days if they are no longer accepting new patients — or, alternately, if they will start accepting them.
  • Health plans can delay payments to providers who fail to respond to attempts to verify information.

The California law also gives consumers recourse. Let's say you use a provider directory to find a doctor but you're billed the out-of-network price because the directory was wrong. In that case, health plans must reimburse you the amount beyond what you would have paid to see an in-network doctor.

If you find yourself in this situation, first take your complaint to your plan, advises DMHC's Rouillard. You will have at least 180 days from the date you received the bill to file a grievance.

"You'll probably have to make a case" to the plan, Rouillard says. "You should explain what you did, when you looked at the directory, and that you relied on that information."

Documentation could help your case.

That's something to consider when you're searching for a provider in the first place. It wouldn't hurt to save a screen shot from the online directory showing the doctor is in-network, or take detailed notes if you call your plan's customer service line.

"Keep copies of everything, and note the date, time and name of anyone you speak to," says Nancy Kincaid, spokeswoman for the state Department of Insurance.

Plans have 30 days to investigate and respond to your complaint. If the situation isn't resolved to your satisfaction, your next step is to take your grievance to your health plan's regulator.

Since the law went into effect, the DMHC has helped one consumer get reimbursed as a result of this law. "I'm hoping consumers don't have to go through process. I'm hoping the directories are accurate," Hernandez says.

It might take time to get there, as health plans implement the new requirements — as well as others that will take effect in the coming months — and work with providers to update the information.

"This is so early and there are so many errors," Rouillard says.

This story was produced by Kaiser Health News, which publishes California Healthline, a service of the California Health Care Foundation. Send questions for Emily Bazar to AskEmily@kff.org.

Copyright 2016 Kaiser Health News. To see more, visit Kaiser Health News.
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Marijuana's Mainstream Move Triggers Different Kinds Of Family Talks

NPR Health Blog - Mon, 09/05/2016 - 4:29pm
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September 5, 20164:29 PM ET Heard on All Things Considered

Debbie Moak, of Phoenix, is against the legalization of marijuana for recreational use. She worries about the potential for people to move from marijuana to harder drugs.

Stina Sieg/KJZZ

If pot laws were colors, a map of the U.S. map would resemble a tie-dye T-shirt.

In some states, marijuana is illegal. In others, it's legal for medical purposes. And still in others, it is even legal for recreational use.

Recreational pot has been legal in Oregon now for a year, but it was a long time coming. Voters approved medicinal pot 20 years ago. Arizona is voting on it this fall – along with California, Nevada, Maine and Massachusetts. It was only six years ago that Arizona approved marijuana for medicinal use.

The Arizona measure is making some voters nervous. A group that includes two county attorneys even sued, unsuccessfully, to get it off the ballot.

Then there's 59-year-old Debbie Moak, who lives outside of Phoenix. She put her son in drug rehab when he was 20.

"A lot of these kids who are going to be impacted the most by this, they won't be voting in this election," she says. "This is where we need to be the adult in the room and protect the kids."

Moak says pot led her kid to use harder drugs. Cocaine became his drug of choice. He dropped out of college and eventually becoming homeless.

"It tears a family apart," she says. "Addiction becomes a disease of the family, and I've lived it, in the trenches. And I don't want to see this happen for any other family."

But Moak used to see that pretty much daily, back when she ran a nonprofit called Not My Kid that worked to keep young people off drugs. For nearly two decades, she spoke to parents in pain because they were unable to reach their children who were sinking deeper into drug dependency.

She opposed the approval of medical marijuana because she feared it would lead to more acceptance of the substance she views as tremendously harmful.

Coming at this from a completely different direction is 60-year-old food editor Martha Holmberg. She lives in Portland, Ore., and says she smoked a lot of marijuana in high school and college then didn't touch pot again until she finished bringing up her daughter. Now it's more a fabric of her social life.

"I don't do it with people that I don't know well," she says. "But if I'm hanging out with girlfriends or we're going over to a friend's house, I will usually bring weed and say, 'Hey, anybody want to get high?' "

Some do and some don't. "And it all flows very comfortably in that situation," she says. "It's not like the pot smokers have to go off to the corner."

Holmberg recently hosted two women writing a pot cookbook. And they needed somewhere legal to try out recipes. The main issue: How much weed to include in each dish?

The equivalent for alcohol would be to figure out whether you make a Moscow Mule with a finger of vodka or a pint. Holmberg says they proved to be a little too cautious.

"At the end of the evening people weren't really very high," she says. "I think some people were disappointed. We actually pulled out a vape pen for anybody who wanted to get high. But it was much better that way. People felt reassured."

Lisa Olson, of Mesa, Ariz., uses marijuana to ease the symptoms of multiple sclerosis.

Stina Sieg/KJZZ

For some people in Arizona, the scene Holmberg described would be shocking. But the introduction of medical marijuana here in 2010 made it a lot more palatable for others. Like Lisa Olson, a mother of five who lives in Mesa, Ariz., outside of Phoenix. She uses pot to help ease the symptoms of her multiple sclerosis.

How does her marijuana use fit in with family life? "Basically, the way we ended up handling it was a lot like alcohol," she says. "So my kids certainly see me drinking a glass of wine with most dinners. They know that's not for them. That's for the adults."

She thinks adults should be able to use pot recreationally, too. For someone like Olson, who had always abstained from drugs, that's quite a change. Once she saw how much good marijuana did for her, she felt it shouldn't only be reserved for people with a few specific ailments.

She's passed this newfound openness onto her children. Jake Olson, 20, says the "just say no" message he got from school wasn't necessarily true. He appreciates hearing that there are times when use in moderation is OK and shouldn't be equated with heavier drugs.

"It's really funny because, you know, most teenagers don't figure out things like that through their parents," he says. "But I am that exception. I am that person who learned that maybe not all bad things are bad, from my parents."

Acceptance is growing in Oregon. But it's been a gradual process. Patrick Caldwell has a Portland business selling pot containers. He is 29 and brings cannabis-infused sodas to parties. He says he might share one at, say, a bachelor party but not at a family picnic. Caldwell doesn't want pot to be taken lightly.

"I want my nephews to be able to make their own informed decision about cannabis without being influenced by the fact that I so regularly use it," he says.

He thinks people need to respect what they're getting into. But he hopes that in a few years, bringing pot to a family picnic will be no different than bringing a six-pack.

This story is part of a reporting collaboration with NPR, local member stations and Kaiser Health News.

Copyright 2016 NPR. To see more, visit NPR.
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Bariatric Surgery Can Help People Keep Weight Off Long Term

NPR Health Blog - Mon, 09/05/2016 - 5:03am
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September 5, 20165:03 AM ET Heard on Morning Edition

A new study counters the presumption that bariatric surgery is just a short-term fix for severe obesity.

Hero Images/Getty Images

It really hit Terry White eight years ago when he was at the mall with his wife. He was out of breath every few minutes and had to sit down. "My wife told me I had to get to the gym and lose weight," he says.

He had dieted most of his life. "I've probably lost 1,000 pounds over the years," says White, a realtor in North Myrtle Beach, N.C. But he put most of it back on.

By age 59, he knew he was headed for disaster; he weighed 387 pounds at just 5 foot 6. With encouragement from a friend, he headed to Duke University Medical Center in Durham where he had gastric bypass surgery. It reduced his stomach to about the size of an egg so his body absorbed fewer calories and fat from food.

The weight just fell off, he says. He didn't feel deprived. He just didn't want to eat that much. In seven months he'd lost 200 pounds. That was eight years ago. He's gained back a bit, but not much. It turns out his success isn't unique.

Researchers with the Durham Veterans Affairs Medical Center in North Carolina recently tracked the progress of 1,787 veterans who underwent gastric bypass surgery. They found that one year after surgery patients lost 98 pounds on average. Ten years later they gained back only about 7 pounds.

Earlier studies have tracked gastric bypass patients for relatively short periods of time, about 1 to 3 years. That has led to the assumption that most people who have gastric bypass surgery will eventually regain the weight.

This study, published online on August 31 in JAMA Surgery, is one of the largest and longest to evaluate the surgery's effects on weight loss. It also did a better job than many studies at follow-up, with 82 percent of participants staying in the study for 10 years.

Researcher Matthew Maciejewski at the Duke University School of Medicine collaborated with Dr. David Arterburn, a senior investigator at Group Health Research Institute in Seattle, in analyzing the data. They expected to see gradual weight gain over 10 years, with some patients gaining back everything they lost.

But they were pleasantly surprised. Patients regained a small amount of weight in the first few years after surgery, but then they "actually plateaued and maintained their weight loss and even lost a little more weight over the next few years," says Arterburn. Just 3 percent of the study participants gained most or all of the weight back in 10 years.

He says the surgery likely interferes with the body's natural defense to less food: a slowdown in metabolism. This is what dooms so many dieters. The study compared the 1,787 veterans who had the surgery to 5,305 equally obese patients who did not have surgery. For the nonsurgical patients, their weight after 10 years essentially stayed the same.

Arterburn says bariatric surgery seems to change how the brain perceives hunger. "Even though they're taking in a whole lot less calories than they were before, they don't feel a constant urge to eat, and it's not just a reduction in the size of the stomach. They don't feel hungry in between meals."

This is exactly what happened to Terry White, who is now 67. He no longer falls asleep all the time. He walks and jogs about 5 miles daily. He and his wife Wanda are planning to charter a boat in the West Indies to celebrate their upcoming 50th anniversary. He says it's been an "unreal" and extraordinary change in his quality of life.

Researcher Maciejewski says the findings of the study provide evidence that bariatric surgery can be highly effective for severely obese patients. He says further research is needed to look at postsurgical complications and how the experience affects long term mental health.

Copyright 2016 NPR. To see more, visit NPR.
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Researchers Question Safety, Value Of Untested Stem Cell Treatments

NPR Health Blog - Mon, 09/05/2016 - 5:03am
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September 5, 20165:03 AM ET Heard on Morning Edition Maria Fabrizio for NPR

Hundreds of clinics around the country are offering to treat a long list of health problems with stem cells.

The clinics claim that stem cells found in fat tissue, blood, bone marrow and even placentas can help people suffering from arthritic joints and torn tendons to more serious medical problems, including spinal cord injuries, Parkinson's disease and strokes. Some even claim the cells can help children with autism.

But leading stem cell researchers say there's not enough evidence to support the clinics' claims.

Doctors have long used stem cells from bone marrow and blood to treat some types of cancer, such as leukemia and lymphoma. And stem cells are being widely studied as potential treatments for other health problems. Researchers hope stem cells may someday make it possible to repair or replace damaged cells, tissues and even entire organs — but there are very few treatments currently available that have been proven safe and effective.

"There's a lot of sketchy stuff going on," says George Daley, a Harvard stem cell researcher.

"You've got clinics springing up, taking a patient's own cells and then injecting these cells into arthritic joints, into spinal cords, into the brain. And there's really no evidence this is going to work," says Daley. "In fact, there are major concerns about safety."

The treatments could cause life-threatening infections, create tumors or trigger dangerous reactions by a patient's immune system, says Daley and other stem cell researchers.

So far the Food and Drug Administration has not aggressively regulated stem cell clinics. The reason is the stem cells being used typically come from the patient's own body — an autologous transplant. And the clinics don't process the cells much before injecting them.

But now that the treatments are being offered so much more widely, the FDA is considering more aggressive regulation. As part of that process, the agency will hold a workshop this Thursday, followed by a two-day hearing next week.

Another issue is cost. Patients are paying thousands of dollars for these treatments, which are not covered by insurance.

"We're talking about really big bucks here," says Paul Knoepfler, a stem cell scientist at the University of California, Davis, who monitors health and safety issues with stem cell clinics in his blog.

The treatments can cost from $5,000 to as much as $100,000, Knoepfler reports in an article recently published in the journal Cell Stem Cell. He estimates that there are more than 500 stem cell clinics treating as many as 100,000 patients a year in the United States.

Knoepfler hopes the FDA will crack down on the clinics.

"The FDA needs to step up its game on this, because otherwise this could continue to grow as an industry, and it's just going to put more and more people at risk," he says.

The clinics defend what they're doing.

"Patients should have access to their own body tissue," says Kristin Comella, chief scientific officer at the U.S. Stem Cell clinic, which is based in Sunrise, Fla. Comella also serves as president of the Academy of Regenerative Practices, which represents the clinics.

If patients "are able to provide and give informed consent to move forward with these treatments, that is their right," Comella says. "In particular for diseases where they have not had much success with traditional medicine."

Comella acknowledges that two of her clinic's patients suffered detached retinas after getting stem cells injected into their eyes. As a result, the clinic has stopped treating eye conditions. But otherwise, Comella says, the clinic has had no serious problems. It offers stem cell treatments for a host of conditions including diabetes, spinal cord injuries and congestive heart failure.

"There are always risks no matter what you're doing. That being said, our group has treated more than 6,000 cases and we've had very few safety events associated with these treatments," she says.

The clinics point out that the cells they are using are not human embryonic stem cells, which are controversial because embryos are destroyed to get them. And they're not induced pluripotent stem cells, which scientists create in the lab.

The FDA has no timetable for when it expects to make any decisions on regulation. In the meantime, the FDA website suggests patients carefully research any stem cell treatment before going ahead with it.

Copyright 2016 NPR. To see more, visit NPR.
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'Ugly': A Memoir Of Childhood, Deformity And Learning To Love A Distinctive Face

NPR Health Blog - Sun, 09/04/2016 - 8:45am
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September 4, 20168:45 AM ET Heard on Weekend Edition Sunday

A writer by profession, Robert Hoge was the first member of his family to go to college.

Matthew Warrell/Courtesy of Penguin Young Readers

Robert Hoge's new memoir is about his childhood — his first day of school, making friends and learning to ride a bike. But it's also about getting called "cripple," having multiple reconstructive surgeries and teaching himself how to play sports with two artificial limbs.

Hoge was born with deformed legs and a giant tumor between his eyes. "The tumor formed really early during my development," he tells NPR's Rachel Martin. "So it subsumed my nose and pushed my eyes to the side of my head, like a fish, and made a mess of my face, as you'd expect."

Hoge lives in Brisbane, Australia, with his wife and two daughters. His new book, for readers age 8 and up, is called Ugly.

Interview Highlights

On how his mother reacted when she learned about his deformities

I was born in the early 1970s, so before prenatal scans were commonplace, and I'm the youngest of five children. And my parents had four healthy kids before me. I'm not going to call my brothers and sisters normal, but they were certainly healthy. And so I think, you know, my parents had every right to expect the healthy, normal child they thought they were owed. But I turned up without any warning, with these deformities. And my mother didn't even see me before I was taken away to intensive care, and she knew something was wrong because it was a difficult labor. ...

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And so I went away to the nursery for a week and then eventually one of the doctors convinced her to come and see me, and when she saw me, she looked down the cot and decided that she couldn't take me home. And so she went back to her bed in the hospital and thought about that a bit more and talked to every person possible she thought may help her not bring me home: She talked to her sister, she talked to her [general practitioner], she talked to her priest, she talked to her local politician, she talked to the doctors there. But she was pretty adamant that she wasn't going to bring me home. And I genuinely think that she was in a form of shock. ...

Eventually, she processed it a bit better and she was really worried about what impact bringing me home would have on my brothers and sisters. So, the quick story is they decided to have a family discussion and they sat down one Saturday morning and talked through all of my problems and whether I should come home. And my parents one by one asked my brothers and sisters, "Should we bring Robert home?" And one by one they all, thankfully, said yes. My sister Catherine, who was only 4 at the time, reckons the only reason she said yes was because everyone else said yes before her, so maybe peer pressure is a good thing.

On how he learned the story of his birth

The reason I know all of that was because one of the doctors at the time encouraged my mother to keep a diary. And she kept this lovely blue diary with beautiful handwriting in it and that was never hidden away from me. It would sit on the couch beside her, or it would be on her bedside table. ... And every now and then I'd ask mum to read me a bit from her book. And so she was really open and honest in that book about her feelings about me, and she was really open and honest with me from a very young age about her feelings. And I think I had a few times where I was a bit concerned and a bit worried and couldn't quite understand, but I think then it just clicked one day that it was like a movie that has some sad parts in the middle but has a happy ending. I was finding all of that out after knowing that my parents had decided to bring me home. And that kind of honesty and that openness was really important to me growing up and I think has really enabled me to be pretty open and honest about all of my feelings in the book.

On how he explained his deformities to other kids growing up

Normally with one quick and short answer. So, you know, kids would ask me, "Why have you got bumps on your head?" or "Why have you got a squished nose?" or "Why don't you have any legs?" And I would simply say, "I was born that way." And probably nine times out of 10, the questions wouldn't go much further than that. ... That satisfied them, and it certainly satisfied me.

On deciding not to have a major reconstructive surgery that would diminish the appearance of the birth defects

I made that decision when I was 14. By then, I'd had 24 different operations, some quite small and some very, very large. And my parents ... they said, "Well, Robert, you're almost an adult so you get to choose." Pretty tough. Big choice for a dumb 14-year-old boy, too, I can tell you. ...

We ended up talking about some of the potential side effects of the operation, and because they were moving my eyes a little bit closer again, there was a chance — and a not insignificant chance — that I might go blind. And my brother, when he heard that, piped up and said, "Well, what use is it looking pretty if he can't even see himself?" So right then and there I decided no, I'm not going to have this operation.

But certainly, you know, when you ask a girl out and she says no, and you're thinking how terribly lonely life's going to be when you're 16 years old, you know, you have moments where you kick yourself and think, "I should have had that operation," or "Maybe I can still have it."

On going against his doctors' advice when he decided to opt out of the surgery

I have genuine love and affection for the massive changes all of the doctors and nurses who worked on me made to my life. But doctors are tinkerers. They're always in the back shed thinking, "If we moved that nose up half an inch, it'd look so much better." But I think, you know, thinking about it now, I'm never going to look like Brad Pitt or George Clooney, so I think I should just stick with my rather distinctive face and go from there.

Copyright 2016 NPR. To see more, visit NPR.
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Colorado Gun Shops Work Together To Prevent Suicides

NPR Health Blog - Fri, 09/02/2016 - 2:02pm
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September 2, 20162:02 PM ET Heard on All Things Considered

From

Jacquelyn Clark, co-owner of Bristlecone Shooting, Training and Retail Center in Lakewood, Colo., holds a list of gun safety rules. One recommendation: Consider "off-site storage if a family member may be suicidal."

John Daley/Colorado Public Radio

It's ladies night at the Centennial Gun Club in a suburb of Denver. More than 80 women are here for safety instruction and target practice.

Tonight the club is offering more than shooting, though. The women rotate through the firing range, and in another large room, they hear a sobering presentation from emergency room doctor Emmy Betz. She's part of a collaboration between gun shops and public health leaders in the state to help prevent suicide.

"If you've been touched by suicide somehow, if you could, raise your hand," she asks. About half the hands go up.

Colorado has the nation's seventh-highest suicide rate. In a typical year, more than half involve guns. Research suggests suicide is often an impulsive act, Betz says, and attempts are much more likely to be lethal when a firearm is used. If people survive a suicide attempt, they are far less likely to eventually die from suicide.

"Unfortunately, with firearms typically there's not that second chance," she says.

Dr. Emmy Betz works in the Emergency Department at the University of Colorado Hospital and also is part of the Colorado Gun Shop Project.

John Daley/Colorado Public Radio

There's a new push in the national conversation about gun violence that is attempting to sidestep the political rancor, to find common ground on one thing — guns and suicide. The campaign in Colorado is called the Colorado Gun Shop Project.

Centennial Gun Club is one of 46 on board. The project formally started in the summer of 2014, modeled after a similar one by the New Hampshire Firearm Safety Coalition.

During Betz's talk, organizers hand out Life Savers candies to drive home the message. Gun owner Lily Richardson says she thinks the information could do just that: save lives. "I think those who are aware and taking the initiative to talk about it can help make the difference," she says.

Nancy Dibiaggio, a new gun owner, agrees. "It's a big issue, and I think it's great Colorado is jumping on the wagon with this."

Dick Abramson, Centennial's owner, says he welcomes the opportunity to facilitate the discussion. "The difficulty is that it's not a topic people want to just bring up and talk about over the cocktail table, right?"

He says workers at his store have refused to sell a gun to someone they're concerned about or feel is having an especially bad day. "My honest feeling is this is a nonpartisan issue," he says. "This is something that everybody can get behind. It should be a universal concern of everyone."

Shooters take aim on Monday Night Bowling Pin Shoot at the firing range of the Bristlecone Shooting, Training and Retail Center in Lakewood, Colo.

John Daley/Colorado Public Radio

In another Denver suburb, the Bristlecone Shooting, Training and Retail Center is also part of the project. At its range, shooters take target practice at bowling pins lined up on the far wall.

In the shop's showroom, store owner Jacquelyn Clark shows off literature on display "that talks about suicide prevention and what to do if somebody you know or you yourself are in crisis," she says.

A poster reads, Gun Owners Can Help! Under a photo of a lone elk in the mountains, it lists signs someone may be suicidal and a phone number for the National Suicide Prevention Lifeline.

Clark says there's now an 11th commandment on gun safety rules: Consider off-site storage — family, friends, some shooting clubs, police departments or gun shops — if a family member may be suicidal. Clark says most people don't realize that the majority of gun deaths are not homicides but suicide.

A survey of hospital emergency rooms by the Centers for Disease Control and Prevention in 2011 found an estimated 21,175 suicides involving firearms compared with 11,208 homicides involving guns.

"The gun community itself is more at risk than the regular community, not because gun owners tend to have more mental health issues but just because they have more access [to firearms]," Clark says.

Jarrod Hindman, director of the Suicide Prevention Resource Center in Colorado, says he appreciates that local gun advocates are taking the lead. "This is their project," he says. "We're just helping to facilitate the process."

More than 500 Coloradans took their own lives with a firearm in 2014, says Hindman, but talking about the role of guns is hard.

"Obviously this is a very contentious topic, and we've found a way to find middle ground in a topic where we didn't think there was a middle ground," he says.

And now, a large trade association for the firearms industry, the National Shooting Sports Foundation, is teaming up with the American Foundation for Suicide Prevention to develop a suicide prevention campaign for the gun group's 13,000 members. Their goal is to reduce the annual suicide rate by 20 percent in the next decade.

This story is part of a reporting partnership with NPR, Colorado Public Radio and Kaiser Health News.

Copyright 2016 Colorado Public Radio. To see more, visit Colorado Public Radio.
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FDA Bans 19 Chemicals Used In Antibacterial Soaps

NPR Health Blog - Fri, 09/02/2016 - 12:56pm

The FDA says there's no evidence that antibacterial soaps do a better job cleaning hands, and chemicals in them may pose health hazards. The FDA ban applies only to consumer products, not those used in hospitals and food service settings.

Mike Kemp/Blend Images/Getty Images

Consumers don't need to use antibacterial soaps, and some of them may even be dangerous, the Food and Drug Administration says.

On Friday, the FDA issued a rule banning the use of triclosan, triclocarban and 17 other chemicals in hand and body washes. which are marketed as being more effective than simple soap.

Companies have a year to take these ingredients out of their products or remove the products from the market, the agency said.

"If the product makes antibacterial claims, chances are pretty good that it contains one of these ingredients," Theresa Michele, director of the FDA's Division of Nonprescription Drug Products, said Friday in a conference call with reporters.

The ban applies only to consumer products, not to antibacterial soaps used in hospitals and food service settings.

Many companies have already started phasing out these ingredients, especially after the FDA issued a proposed rule in 2013 that required companies to provide data on products' safety and effectiveness.

But not all. On its website, Dial's "All Day Freshness" antibacterial soap, for one, lists triclocarban as an active ingredient.

The Henkels Co., which owns Dial, didn't respond to an email seeking comment.

Many companies have replaced triclosan with one of three other chemicals — benzalkonium chloride, benzethonium chloride or chloroxylenol (PCMX) — in their antibacterial products. The FDA has given companies another year to provide more data on their safety and effectiveness.

There is some evidence that triclosan, triclocarban and the other chemicals can disrupt hormone cycles and cause muscle weakness, says Mae Wu, a senior attorney at the Natural Resources Defense Council, which originally asked the FDA to ban the ingredients.

The rule is part of a broader effort by the FDA to encourage consumers to skip so-called antibacterial soaps and simply use regular soap and water.

"There's no data demonstrating that over-the-counter antibacterial soaps are better at preventing illness than washing with plain soap and water," the agency said in a press release issued shortly after the rule was announced.

But advocates for the soap industry dispute that.

"Washing the hands with an antiseptic soap can help reduce the risk of infection beyond that provided by washing with non-antibacterial soap and water," said Brian Sansoni, spokesman for the American Cleaning Institute, in an emailed statement.

The FDA statement said that data submitted by the companies about the 19 ingredients wasn't sufficient:

"For these ingredients, either no additional data were submitted or the data and information that were submitted were not sufficient for the agency to find that these ingredients are Generally Recognized as Safe and Effective."

Here is a list of the newly banned chemicals:

  • Cloflucarban
  • Fluorosalan
  • Hexachlorophene
  • Hexylresorcinol
  • Iodine complex (ammonium ether sulfate and polyoxyethylene sorbitan monolaurate)
  • Iodine complex (phosphate ester of alkylaryloxy polyethylene glycol)
  • Nonylphenoxypoly (ethyleneoxy) ethanoliodine
  • Poloxamer-iodine complex
  • Povidone-iodine 5 to 10 percent
  • Undecoylium chloride iodine complex
  • Methylbenzethonium chloride
  • Phenol (greater than 1.5 percent)
  • Phenol (less than 1.5 percent) 16
  • Secondary amyltricresols
  • Sodium oxychlorosene
  • Tribromsalan
  • Triclocarban
  • Triclosan
  • Triple dye
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